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標題: | 臨床資料的使用與隱私顧慮的主觀感受:醫師、護理師、受試者和一般病人之比較 The Use of Clinical Data and the Subjective Perceptions on Privacy Concern: To Explore the Differences among Physicians, Nurses, Trial Patients, and General Patients |
作者: | Cheng-Hsin Lu 呂正忻 |
指導教授: | 張榮珍(Jung-Chen Chang) |
關鍵字: | 臨床資料使用,隱私顧慮,癌症患者,臨床試驗,健康資訊分享, clinical data use,privacy concern,cancer patients,clinical trial,clinical research,health information share, |
出版年 : | 2020 |
學位: | 碩士 |
摘要: | 背景:保護受試者隱私是招募患者參加臨床試驗的關鍵因素,然而目前關於患者隱私態度的相關研究卻很少,在臨床試驗領域甚至尚無類似的研究,因此本研究探討醫師、護理師、腫瘤臨床試驗受試者和一般腫瘤病人之不同角色身份對於臨床資料的使用與隱私顧慮的主觀感受,是否具有角色上的差異。
方法:本研究運用具信效度之自擬問卷邀請受訪者自填,問卷三大部分,一是基本資料與臨床試驗經驗,二是對於臨床資料的使用看法,三是關於不同資料項目涉及隱私顧慮的主觀感受,以量性橫斷式的研究採不記名方式填寫問卷,共招募36位醫師,92位研究護理師和169位腫瘤患者參加,問卷以李克特氏量表進行評估,測量著重在隱私強度和對個人健康數據被使用在臨床研究中的態度。 結果:結果顯示不同角色身分者對資料使用與隱私顧慮存在顯著差異。 在臨床資料使用的看法上,七個情境敘述中,有五個情境在試驗組與臨床組病人兩組間的回答是存在顯著差異的,但同時也發現「受試者會希望研究者只使用經過受試者授權同意的部分資料,而不是全部病歷資料」,同意與完全同意的比例在兩組病人都高(試驗組61% ,臨床組60%),因此病人表達期望僅使用被授權的部分資料是明確的。個人資料如何被使用在三組比較(醫師、護理師、病人)皆有差異(p<0.0001),表示專業人士(醫師、護理師)所揣摩的病人想法不同於病人真實的想法(p<0.0001);當比較專業人士兩組(醫師與研究護理師)看法時,醫師與護理師在四個情境的看法亦有顯著差異(p<0.0001)。試驗組病人、臨床組病人、醫師、護理師,在自行填選的隱私資料顧慮的主觀感受上,於六大項32小項目中,兩組病人間多數看法接近,但在「中草藥使用」、「政黨傾向」、「精神疾病史」、「基因檢測報告」、「自殺/自傷經驗」、「藥癮史」等6小項呈現試驗病人較臨床病人擔心顧慮。醫師和護理師間比較多數沒有差異,但在「飲食習慣」、「抽菸習慣」、「健康保健食品使用習慣」、「登革熱病史」、「肺結核病史」、「政黨傾向」、「重大疾病家族史」、「不孕症/人工受孕史」、「藥癮史」、「流產(含人工及自然)病史」等10項目,有顯著差異。 結論:於臨床試驗研究領域中,臨床資料使用與隱私顧慮主觀感受兩方面確實均存在不同角色間的顯著差異,有臨床試驗經驗的患者對隱私顧慮的程度較高,但也對臨床研究的態度更正向積極,發現有隱私悖論(Privacy Paradox)的現象。本研究結果可以為臨床試驗提供一個倫理與實務兼具的規範參考,未來需考慮資料的適當存取與保密,方能符合法律之規範與倫理之期待。 Introduction: Protection of privacy is critical in recruiting patients to participate in clinical trials; yet, there is very little literature examining the topic of patient's privacy concern. This study investigated the attitudes toward healthy data use and intensity of privacy concern from the views of patients and professionals (physician and research nurse) in clinical research settings. Methods: This cross-sectional quantitative survey used a newly-developed questionnaire. A total of 297 participants were recruited (36 physicians, 92 clinical research nurses, and 169 cancer patients) to rate a 1 to 6 Likert scale questionnaire. The measures focused on the privacy concerns and personal data being used in clinical research. Results: The attitude toward use of clinical health information as well as the concern about privacy exist significant variations among different roles in clinical trials, including physicians, research nurses, and patients. Among 7 situations, five were different between trial-patients and non-trial-patients. However, both trial and non-trail cancer patients both tended to agree that “Subjects will expect the researchers to use only some of the data approved by the subject, not all of the medical records” (trial 61% agree and non-trail 60% agree). Physicians, research nurses, and patients were also different on the use of clinical data (p<0.0001). There were significant differences among physicians, research nurses and patients at 32 items in six categories. Trial and non-trial patients concern differently at 6 items, including 'Chinese herbal medicine use', 'political party tendencies', 'history of mental illness', 'genetic testing', 'suicide/self-injury history', and 'history of drug abuse.' The physicians and the research nurses viewed differently in 10 items, such as 'dietary habits', 'smoking', 'health food and dietary supplement', 'Dengue fever history', 'Tuberculosis history', 'political party tendency', 'family history of major diseases', 'infertility/history of artificial fertilization', 'history of drug abuse', and 'abortion (including induced and natural).' Discussion: Although the patients with trial experience had higher intensity of privacy concern, their attitudes tend to be more positive on contributing their data to clinical research. The phenomena of “Privacy Paradox” exist. The results could shed some light on the guideline for researchers to establish an ethical and practical clinical research. In the future, appropriate access to clinical data and confidentiality of privacy data should be considered in order to compliance with the norms and laws as well as the ethical expectations. |
URI: | http://tdr.lib.ntu.edu.tw/jspui/handle/123456789/64449 |
DOI: | 10.6342/NTU202000607 |
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顯示於系所單位: | 護理學系所 |
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